I had the bright idea to create a registry in an effort to collect data to evaluate specific outcomes for people diagnosed with Devic's Disease/NMO. In my mind the registry would help to determine the percentage of people who are diagnosed with Devic’s Disease. I believe the registry would help with respect to research in that comparisons to the effectiveness of different medications that are currently used to treat Devic's/NMO could be made. As it stands there does not seem to be enough if any results to determine whether Azathioprine or Rituxan or other medications are more or less effective when it comes to treatment of this disease.
I wrote to various agencies regarding whether or not a registry is available and if not how I could go about creating one. I made contact with Genetic and Rare Disease (GARD) and The National Organization for Rare Disorders(NORD) in an effort to learn how to create a registry. GARD put me in contact with the Genetic Alliance and NORD put me in touch with the Agency for Health Care Research and Quality which provides the type of information I was seeking. They also gave me a link to go to and request "Registries for Evaluating Patient Outcomes: A users guide to help me in my quest.
After careful consideration, I decided not to attempt to create a registry. NORD is in the infancy stage of creating a registry. They feel that "it is so incredibly important to have specific rare disease registries". Once they have formed a plan they will make the information available to the public. The SistaMoon Foundation will then provide the information as a resource. This will ensure accurate information is being promoted. The book I received enforced the notion that creating a registry is very difficult. I do not have the time or man power to create a registry.
